Our family's chordoma journey began when my daughter-in-law, aged 30, was experiencing severe fatigue and deteriorating eyesight. She was sent to Adelaide, nine hours from home, where she was diagnosed and operated on in the same week. She had a nine-hour operation to remove chordoma at the base of her skull.
The diagnosis immediately separated the family from home, work, and support. She was away for more than four weeks. For the first two weeks, her partner had nowhere to stay, which added enormous stress at an already frightening time. Since then, there have been major headaches, repeated scans, many medical appointments, and the constant pressure of being unable to work. Financial stress became unavoidable. Her partner had to leave work and sell his car to help cover costs.
The family was advised to seek treatment overseas and waited months for approval. They were grateful to receive support through the Medical Treatment Overseas Program, but the experience was still extremely stressful. After travelling overseas and undergoing further tests and appointments, they were told the proposed treatment could cause too much damage to the pituitary gland and that it would be better not to proceed. Our question is: why could this not have been made clearer during appointments in Australia before the family had to go through the stress and expense of travelling overseas?
Chordoma has affected every part of their lives. There has been no local support, ongoing uncertainty, financial strain, and emotional distress. It is hard for a young couple to plan a future when so much time is spent organising medical travel, follow-up appointments, and decisions about possible future treatment. We are deeply grateful that overseas support exists, but we want decision-makers to understand that Australian families should be able to access the right expertise and treatment here. Research and investment are essential so that patients can receive care in Australia, with clearer information, less disruption, and more certainty.